1 year anniversary

So, today marks the one-year anniversary of my son’s heart surgery.  What a crazy year it’s been.

For those of you who don’t know, we learned at my wife’s 20-week ultrasound that our then unborn son had several serious heart defects which would require surgery within a few weeks of his birth.  As you can imagine, the  second half of his pregnancy was just BRUTAL.  To make it worse, the cardiologist was concerned that he suffered from a genetic disorder as well which would have completely changed our lives.

When he was finally born, he actually was doing pretty well, other than the fact that he was in heart failure for the first 3 weeks of his life.  He ended up not having the genetic disorder.  His little heart was beating so fast, that they didn’t even want to let us leave the nic-u.  It was only because of our cardiologist’s insistence that it wasn’t going to improve that they finally let us go.

Those 3 weeks of waiting were absolutely miserable.  He was in heart failure the whole time.  His heart was beating WAY faster than normal.  His breathing was very rapid and shallow.  He could barely eat.  He was losing weight like crazy, and we almost had to admit him another time because he had lost such a large percentage of his birth weight.

On 9/14/09 we left for Stanford, California for his surgery.  Our other kids had just started school and had to stay home for the 2 weeks we were gone.  Thank goodness my in-laws live close and were able to come stay with them.  They had a really hard time and were really sick while we were gone, but that’s another story.

On 9/15, we spent the entire day at the hospital doing pre-op tests.  Ultrasounds of his heart.  Blood work.  In fact, I almost had to get in a yelling match with the lab tech who couldn’t freaking find my son’s vein in his arm and had to poke him many times while we held him down screaming.  I finally had to yell for someone else to come in who got it the first time.

When we went to be that night, we were freaking out.  WE couldn’t let him eat anymore because of his surgery the next morning.  I remember laying there in the hotel, out of my mind with worry, and Connor sleeping on my chest as he usually did back then.  It was the only way to keep him calm and sleeping.  His little chest was rising and falling so fast from his breathing that it hurt my chest to have him there.

On 9/16 we had to be up really early, like 4 or 5:00 in the morning because he had to be at the hospital very early.  We went in, changed him into his little gown and then waited forever for them to come take him.  It was really only like 45 minutes, but it seemed like an eternity.

When the anesthesia team came to take him, we didn’t even want to let him go.  Adrian sat there holding him so tightly.  One of the doctor’s on the team said they would take good care of him, and then we had to watch them walk down the hall and out of sight, not knowing for sure if we would ever see him again.

He told us it would take 5-7 hours or so, once the surgery got started, which, if memory serves, was about 9:00.  I remember thinking that if all went well, he would be out mid to late afternoon.

We tried to walk around and take our minds off of it.  But, c’mon.  We were wrecks.  Even then, as we sat there at the hospital with surgery happening, it was just surreal.  We’d never had any problems with our other kids.   That kind of stuff just didn’t happen for us. 

Every minute was an hour as we sat there, both trying to be brave for the other, pretending that we were just fine.

At right around noon, or so, the doctor on the anesthesia team who took Connor from us in the morning called to give us a promised status update.  He said everything was going fine, and that they probably be another 4-5 hours.  Right on schedule, or maybe even a little behind.  We went out to our car and tried to take a nap in the shade of the parking garage because there was no way we could rest in the hospital.

After another hour or an hour and a half, the lady from the surgery waiting room called my cell to say that the surgeon was there looking for us.  We nearly sprinted back in to the hospital.  Both terrified and thinking the worst but afraid to even mention the possibility.  It had only been an hour of the predicted five remaining of the surgery.  We got to the waiting room and the nurse said the doctor had left and she would call him.  So, we sat there for 30 grueling minutes while they tracked the doctor down and got him back to us. 

When he first sat down, all he said was that the surgery was done.  I think when you’ve done as many as he has that you forget how anxious the parents are to find out the results.  After another minute or so of him explaining stuff, I finally just had to ask: “is he ok?”  He smiled.  “Oh yes.  All fixed.  Good as new.”  With that, we instantly broke down into tears, the emotions which had been so long bottled finally bursting through.  We thanked him, and he told us that they’d come get us in a few minutes to take us up to where Connor was in the cardiac intensive care recovery.

If you haven’t ever been through something like that before, you just can’t even begin to contemplate the fear, stress, relief, etc. that you go through.  Emotions unlike any I’ve ever experienced.

A nurse came out and made sure we knew what to expect.  He would be hooked up to many devices with wires and tubes.  We assured her we had already been briefed on that and knew what to expect.  Turns out we were wrong.  No amount of explanation or description can prepare a parent to walk in and see their 3 week old baby hooked up to every machine imaginable.  It was like an image out of a bad sci-fi movie.  He had various IV machines, heart monitors, breathing monitors, pressure monitors, drain tubes, breathing tubes, defibrillator leads coming directly out of his heart, a respirator, etc.  Anyway, as you can see from the picture, it was a nightmare.

Anyway, we sat at his bedside almost without fail, often in shifts, for the next 8 days.  Slowly, but surely, they started disconnecting him from stuff.  The breathing tube was first.  Then a drain tube.  Then some of the iv meds, etc.  They didn’t pull the last of the wires from his heart until minutes before we were discharged.  And when I say wires to his heart, I literally mean insulated wires going through his chest cavity and placed directly into his heart.  They literally just grabbed them at the end and pulled them out through his chest wall.

As we were getting ready to leave, the on-call cardiologist came to talk to us.  We told her we were terrified to leave the hospital and all the doctors and monitoring equipment.  She looked at us with a really weird look and said: “but, he’s all better.  You guys had him at home for 3.5 weeks when he was in chronic heart failure, and you’re worried to take him home now that he’s fixed???”  LOL.

It’s been a year now.  And, even though it’s been difficult because Connor has been so stressful, he’s all better.  Even though they told us that when we left, the worry doesn’t just go away.  We stress every time we see the cardiologist again.  Every time he gets sick.  It’s always in the back of our minds, even though we know he’s as good as new.

Well, here’s to the END of a HELL-year, and hopefully to the beginning of a GREAT one!  Thank you to all of our family and friends who prayed and supported us through this very trying time.  We don’t know what we would have done without you!!!

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One thought on “1 year anniversary

  1. What a tender time. You’ll never be sad that you wrote that all down. To hell and back is just about right! What a survivor little Con is! It’s still hard for me to think he’s the same kid I photographed. He’s such a healthy little chunk now! =)

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